Birthdayversary

At the end of July it will be two years since diagnosis.  In March 2012 it will be two years since treatment completion.  Milestones in terms of recovery.

Today, July 2, 2011, is my birthday.  This is the first birthday in Seattle that I felt totally engaged in and part of the celebration.  I know that sounds untrue, but it is totally honest.  I have so much more energy than last year and my body is recovering.  I've decided that the remaining pains and problems will probably be life-long.  For to have a life that is long with this pain is my blessing.......

I had the best time with my MOM, Sister, her husband and their two lovely girls.  We went to a Greek restaurant in Phinney Ridge called Yanni's.  It was delightful.  they cook all meals made to order, fresh food and comfortable, friendly atmosphere.  Beautiful venue, soft blues, nice artwork, clean, Greek music in the background.  I definitely want to go back.

The best part was that everyone enjoyed their meals, laughed and seemed to have a good time.  

The sun was so bright today, it was nice for a change not to worry about a coat. 

 Everything just came together,

My brother called me, my dad, my aunt and uncle, an old boyfriend sent flowers ( don't tell "J")...just kidding.  He is a friend and lives on the other side of the country.

Speaking of "J", things seem to be going well.  We walked around a green lake last week in the evening and had a late bite. Casual but so much fun.  He's so sweet.  Sigh....

My labs are good, 9 of 35 for the CA125.  I have some twinges in lower pelvis and that pesky ongoing abdominal pain that has taken up residence since surgery.  I was told that in that area are surgical clips.  Supposedly surgical clips can become surrounded with scar tissue, and get "inflamed".  Great....sigh  

So my pain is an ongoing issue, plus I get nausea with every single hot flash.........drag to the max.

I have a CT scan next week to rule out recurrence.  If nothing shows, they may refer me for an endoscopy.  I hope we have more conversations as to how to manage the clips.

I don't thing the clips can be removed as they were inserted to block the ovarian arteries. Now that I have no ovaries, there's no need for their blood supply.  But it makes complete sense that these darn clips are causing me pain.  Not sure if anything could ever be done about that........the battle continues always.

Ha...wanna hear a funny.  I got rejected to work in a call center.  How pathetic is that.  I guess I'm not quite the shark they need. Probably all for the better, I'd pry end up hating it, too much stress and rejection.

So the job hunt continues...........................................

I'll send an update on the CT scan.  The main energies in our family are directed to supporting my dear mom right now.  She has surgery in a few weeks and will start dialysis.  It's scary for me, not sure about anyone else.  I want her to do well and pray that she adapts easily to the treatments.  Most of all I pray she feels better and regains her sense of "life" and vigor.  I love you mom!!!!!

Peace and Blessings to all.  Thanks for stopping by!

My dream

I had a really interesting dream last night.  I dreamed about my amazing surgeon, my amazing gynoc, my family and other people I don't know.  It was a celebration, my party, that I no longer had cancer.  

It was fantastic.

Imagine an old french cottage, but it's the size of a huge warehouse.  The cottage house was nestled up in some mountain range and I was frantically trying to prepare food for my guests.  I knew they were coming over to celebrate my recovery, but I had no food to serve.  This was causing quite a panic.

All I had were partial jars of spaghetti sauce (which I rarely buy) and a fondue pot.  I was so stressed because I had all these people over and nothing to serve. Anyway, the place was crowded, laughter all around, everyone was having fun!  My beautiful sister was entertaining everyone with her artwork and she had even designed a fantastic set design for U2.  She had mocked up a miniature set backdrop and was going to enter it into a contest.  Everyone was proud of her work.

My cousin and loving aunt were with me in the kitchen helping with food, the rest of the family and friends were in the living area.  Suddenly my surgeon came in and gave me a big hug and off in the background my gynoc waved at me and gave me a big smile.

My surgeon was wearing a huge fur coat and looked like he was off to go skiing in the alps, funny.  He looked deep into my eyes and said I was going to be OK.  (I can still feel his hug)  It was a great dream.

I see my gynoc's nurse practitioner tomorrow, for a follow up, get a CA125 and physical exam.  I hope my dream is a reality and that things stay good.  I'll let ya know.  Have a great Sunday.

Peace, love and blessings.  

Thank You Cancer Lifeline

I wanted to take some time to thank Cancer Lifeline today.  I have been graced with their help in several ways, and if you are looking for a serious place to donate money, think of Cancer Lifeline.

For the past several months, I have been able to receive free dental care, and let me tell you, that has been a huge savings for me.  Chemotherapy can do a number on your teeth, and through Cancer Lifeline, amazing dentists and dental assistants volunteer their time to help cancer patients maintain healthy teeth.  At the risk of getting too personal, I was unable to tend to my teeth while on chemo and for a while after chemo.  

Several months ago I was referred to their services by a team member of the Survivor program at the SCCA.  The SCCA takes very good care to help patients with aftercare, and the dental referral was part of that ongoing maintenance.  Wow, I couldn't be happier.

The other blessing offered to me has been a recent series of phone calls from a Cancer Lifeline volunteer.  I have the opportunity to talk about my feelings and figure out healthy ways to resolve emotions related to my cancer.  It has really helped me a lot, especially in the past few weeks.  

Cancer is complicated, everyone has their own view on cancer, it's process and an individual's future.  We all want for nothing but great results to come from surgery and treatments, and hopefully that IS the case.  Getting through the process of diagnosis, treatment and recovery comes with all kinds of issues, good and bad.  Cancer Lifeline offers just that, a lifeline.  Check them out and see for yourself.  Maybe you are a cancer patient in the area or a caregiver in need of a little support.  Peace, Love and Blessings

http://www.cancerlifeline.org/

Ovarian Cancer literally bullies it's way around

http://edmonton.ctv.ca/servlet/an/local/CTVNews/20110614/ovarian-cancer-cells-invasion-mechanics-study-110614/20110614/?hub=EdmontonHome

This article and accompanying video is fascinating, scary, potentially a breakthrough in finding the right way to handle ovarian cancer.

Prescription Drug Program

Prescription Drug Program

If you live in Washington, you can get a discount on medications through the Washington Prescription Drug Program. I received this information from helpful people at the Department of Vocational Rehabilitation.

I have not used it yet, but I researched one of my medications and there was a very substantial savings. I spent $131 on a new medication this weekend, ouch! I had to put it on a credit card. I have been stressed out because the monthly cost will be $200, and it's a very important prescription.

 I WAS DEBATING TO DISCONTINUE THE MED......

When I asked DVR for help, they e-mailed me this resource. It's free and worth a look.

I literally do not have the money for my latest med, so this is so helpful. I'm still waiting on a decision from SSDI to get my payments up to what should be allowed, sigh.

I like this because it's a good example of how asking for help can be a good thing.

I don't always ask for help in the right way, or I ask the wrong people, or whatever. Hopefully this will help some of you. If you don't live in Washington, I hope that your state has a similar program.

Peace and Blessings,

Denise

Boot Scootin' along

A sprained ankle!  Welcome to the real world.  I fell off a curb the other night, and this is my reward.  I've never had a sprained ankle in my life, and now I get one....HA.  The curb was only a few inches high, but it was covered with leaves and little branches etc.  I had no clue that a curb even existed until I found myself tumbling to the ground, of course in S-L-O-W motion.  I could walk on it but it hurt.  "J' was walking with me and he was so sweet, he said he wished he'd held onto me.  We had been holding hands, but had let go right before I fell............sigh.

At 3am I found myself crawling across the floor to get some ice because I couldn't walk on my right leg.  The  next morning I was still crawling around because I couldn't put any weight on my foot at all.  My insurance company told me that they preferred I go to my PCP instead of ER.........so mom and I took a cab ride to the PCP.  They did Xray and found no fractures, thank God.

The thing is that it was great to have mom there with me, I really needed help.  AND it was sort of a refreshing change of pace to see a doctor for something normal.  No major episodes of anything tragic or cancer related, just a sprained ankle. Not that I'm happy to have a sprained ankle, but it was just nice to have something simple for a change.  

The doctor, the nurses, the techs were all so so nice.  Wow, that was great!!!!

Plus, we are changing my antidepressant now....yay.  Going to ween off of Paxil and start Effexor.  Hoping that this change will decrease my drowsiness and help me to get up earlier in the day.  Really need to be able to function on 8 hours of sleep versus 12.  Getting back into a normal life will demand that.

Thank you to my friends and previous co-workers who have given me permission to have future employers contact them for references!!!!  Really need THAT.

Please follow my sister on her Weathered Silo Blog, just to the left here of my blog.  http://www.weatheredsilo.blogspot.com/

I have seen her beautiful paintings and they took my breath away.  She really is talented.  I can't wait for her to start selling her work.  

My brother was chosen to coach a hockey team and they will be travelling out of state to compete in some championship competitions.  Yay for him.

My cousin Tammy is having her baby shower this weekend...yay.  My aunt and uncle are so excited!!!!

And my mom is having a good day today....yay.

Love you all!!!!!!!!!!!!

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

Sufferers of ovarian cancer get new hope - Chronicle News - News from @EveningChron

Some of you may find this really helpful to your cancer care. Peace and Blessings to you all!

Nightmares and job hunting

My mood is edgy, angry a bit, overwhelmed and begging for an answer to my "why".  I met with my vocational developer today to start the process of actually applying for new jobs.  It was as if nothing I'd said before about my needs, wishes, accommodations and preferences was heard.  I know it was, it's just that the reality of job hunting is not soaking in like a smooth bubbly bath, more like a how a hard wave of water slaps you in the face, ouch.

Speaking of water, before I get into the hurdles for today, I have to tell you about ongoing dreams that I've been having lately.  For the past few nights I have been dreaming that I am staying at this luxury hotel, sounds great right, except that everything that happens is weird and spooky.

Last night I jumped into the deep end of the spa pool feet first, and never touched bottom.  I remember feeling the rush of water sweeping upward along my body, desperately searching for the edge, to stop or spring up.  I can't remember how I surfaced, but I eventually did.  I thought I was going to drown. Then I was in a getaway car and one of my little nieces was in the driver seat.  She was laughing and having a ball driving this huge car, and I was hiding from an ex-boyfriend.  Then suddenly my sister and her husband lived in the luxurious hotel, and I was shown into the massive kitchen.  

The kitchen was made of all 1" square old fashioned blue tiles, everything was the same color, including the food and sink.  Then her husband offered me some licorice covered with frosting. My sister welcomed me for a tour, but I woke up before it started.

I have no clue what any of this means.

Some of you may know that I am one of many women who were misdiagnosed and because of stupid doctors in California, I was diagnosed with an advanced stage of ovarian cancer.  Being forever grateful to God for my excellent surgery and chemo, I am lucky to be alive.  

To get to the point of today, I'm lucky to be alive, but feel like I have no control over what is left of my future.  I am doing OK with cancer so far, NED.  

If I want to be able to live independently, I'll need more income.  If I want to enjoy life and take a trip, I'll need more money.  If I want to give at Christmas, I'll need more money.  You see where I'm going here.

Today, my job developer pulled several possible job opportunities that she thought would suit me.  All of them are too far away, some only paid $10, most have expectations I cannot do or require skills I don't have.  Her approach is more like tossing a bunch of spaghetti on the wall and seeing what sticks.  My approach is to be laser focused so I'm not running around with my head cut off.

She is right, I just need to get out there and apply.  She guaranteed me that she will be my advocate and help me with accommodation requests etc, AND she can help communicate with the human resources department once I've submitted an application to help move the process along.

I am very lucky to have this kind of support,  I have fought very very hard to receive it.

My question is this:  Why is someone who has a high risk of recurrence being forced to go back to work?  Why can't I just ask the lousy gynecologist who ignored my symptoms, and didn't do a bi-manual pelvic exam, to give me money to live on so I can be happy?  Oh I forgot, he isn't held accountable for ruining my life.  (At least that's how I feel at this second........)

How do cancer survivors travel the world?  I'll never see that day.

My job developer is trying to understand, she knows I just want a job where I come home and feel good about what I did at the end of the day.  I don't want it to be more than 15 minute commute, because it's only part time.  I get tired, I get exhausted.  I don't want a long commute for a part time job, unless it pays really really well.  I'd love to work for an organization that helps people with cancer.

Hence, why am I being treated like I'm asking for the world when I say I want to to work from home, no sales.  Is that too much to ask?  PLUS, a job working from home allows me to work while on treatment if I have a recurrence, so that I can keep money coming in.  Geeze.

I hate this, competing with able bodied people who can burn the midnight oil.  I can't.......never could.

I don't deserve this ongoing heartache. I'm physically and emotionally spent when it comes to jobs and job hunting.  I don't want to play games, I just want to do worthwhile work and in the process of doing so, do that work in such a way that it doesn't kill me by stressing me out or exhausting the heck out of me.  Again, I ask too much.

Ever since I lost my career in the mid 1990's I have been struggling so badly and when I got cancer I had a good job with benefits, and had to move to Seattle.  I had no choices here.  For most of those other years I rented rooms in people's homes because I couldn't afford my own apartment, California is expensive.  I lived like a gypsy.  I don't want to be a gypsy any more.  

I am starting over again and hating it.  But I will pull through somehow, with the Grace of God.  Life could be worse, so I know I'm much better off than a lot of other people.  I do know that.....I just want a break.

Peace

The FUTURE OF SURVEILLANCE?

Medical News: Group Issues Gyn Cancer Follow-Up Guidance - in OB/Gyn, General OB/GYN from MedPage Today

I pray that women with gynecological cancers will be able to continue to receive their cancer surveillance services from gynecological oncologists. If the information in the article comes to fruition, your primary care doctor, the one who missed your cancer in the first place, will be responsible for monitoring for possible recurrence in the future.

What What What What What

How tragic ......

I don't know how to stop this ball from rolling but we all must pay attention to this possible trend.

Remember Ovarian Cancer and Dr. Oz

I'm thinking out loud here...........

Why is the medical training segmented into body systems versus body regions?  I ask this because this "systems" frame of reference is probably one of the biggest reasons ovarian cancer is often detected in an advanced stage, if at all.

I attended a very informative survivors course on May 20th designed to help ovarian cancer survivors better heal, understand this illness and look for ways to start to move forward with their lives.  I enjoyed it and was fortunate to hear my gynoc speak, she did amazing.  I met some women from my online ovarian cancer support group, yay.  Overall, I learned a lot, walked away with good resources, and made new friends.

Dr. Goff presented incredible research done on early detection of ovarian cancer.  But we are really still in the research stage.  Of course I can't remember all the details and left my notes in another place, but it's safe to say that Ovarian Cancer researchers are aggressively testing for valid and reliable early detection methods.    It's on the agenda and we must continue the fight.

So at the end of the day, the best mechanisms for early detection are for women to pay attention to their bodies, look for early signs of ovarian cancer and tell their doctors what's going on. Then we need to depend on the physician to know what tools are needed to accurately detect what illness is present, and know then how to properly treat the illness. Is it IBS or ovarian cancer?  We are constantly amazed at how frequently a woman with deadly ovarian cancer is told she probably has IBS and almost dies.

So what about women who aren't even aware of the symptoms?
What about women who have few or no hard symptoms?

We pray for good doctors.  If a female has an under-informed or misinformed or outright negligent primary care doctor or regular gynecologist, please pray for her.  

If you know my history, you know what I'm talking about.  Here's a reminder.....early symptoms for me were low back pain, cruel/severe abdominal pain, whacky periods........eventually bloating, even more abdominal pain, unable to eat real food, getting full quickly, problems with urination ( I was told to do kegel exercises).

All of these symptoms occur in the abdominal and pelvic region of a woman's body.

BUT, instead there are multiple doctors evaluating the same region of your body, all looking at different systems. Not ONE, not ONE detected my ovarian cancer early.  Early detection rarely occurs.  

I went from PCP to regular gynecology to gastroenterology and even oncology.  The last gynecologist who treated me in California never did a bi-manual pelvic exam.  I was having problems.  I'll always wonder if he could have detected it early....

The gastroenterologist did a colonoscopy/endoscopy and found nothing.

My PCP was worthless, and said it was up to the specialists to figure it out.  She's the one who told me to do kegel exercises for my urinary frequency.  Meanwhile I was having other problems....ugh

And, I'll remind everyone I was told by at least three doctors I was too young to have ovarian cancer.  One oncologist (who only saw me one time) told me he chose not to do a CA125 test on me because of my rheumatoid arthritis.  Since I was told I was too young to have ovarian cancer, I actually believed them.

Again I thank God that He sent me an excellent surgeon and then an excellent gynoc in Seattle.  It's like finding the last lifeboat on the Titanic.

So here's my solution.  Instead of a million doctors looking at different systems in the same region, lets have a few specialists look in the abdominal as a whole and see how things work together for a change.

If medical care was based on regions, then all the organs and tissues in THAT region would be analyzed.  It doesn't mean that the doctors couldn't incorporate their comprehensive system knowledge, it just makes diagnosis more efficient.  I think we assume that the PCP is supposed to wear this hat, be the central information communicator.  Alas the PCP seems to have been reduced to a referral agent.  I hate to say it but they don't seem to know as much as they used to, maybe that's all in my head.

In other words maybe a new area of medicine is necessary, an abdominal cavity specialist.  Not to detract or add to the multitude of specialists already in existence, but in the case of ovarian cancer, the symptoms show up when the tumor grows large enough to negatively impact other "systems".  It impinges on say the ureter or the bowel or some other organ nearby.  It is then that we know something isn't right.

You would think that logic would dictate that because the ovaries are hidden, that doctors would be MORE aware of ovarian cancer, because they should be aware of hard to detect illnesses/diseases as well as easily detected diseases.  It's like the medical community only wants the easy patients sometimes.  How harsh us patients must be if we were to expect a gastro doc to be aware that ovarian cancer symptoms are similar to IBS.  We are demanding aren't we....

So at the end of the day, we as women need to tell the doctors we might have ovarian cancer.  Unless you are favored by God to have an amazingly bright and informed physician who remembers ovarian cancer, you may get misdiagnosed.  

ALL WE ARE ASKING DOCTORS TO DO IS TO REMEMBER OVARIAN CANCER.  THAT'S NOT TOO MUCH TO ASK IS IT????

In the mean time, please link to Dr. Oz show as he is taking the daytime TV show lead to help teach women the signs of ovarian cancer.  Dr. Goff is also on his show.  She provides valuable and lifesaving information and explains very clearly how dedicated she is to ending this deadly disease. She also reveals new research in the field of ovarian cancer, please watch the program. 

http://www.drozfans.com/dr-ozs-advice/dr-oz-ovarian-cancer-symptoms-warning-signs/

Please......

REMEMBER OVARIAN CANCER

Peace and Blessings

Dear Cathy Rest in Peace

I have to take a deep breath because I'm about to write a difficult blog.  Our beloved online teal sister 

Cathy A. has left our earthly world and has moved on to a much better place.  

She is now with God, resting and hopefully smiling.

When I first joined this online community of amazing people, Cathy was more than likely the one to post a funny story or joke, to help us heal through laughter.  She was gifted, blessed and very generous with her humor.  I always enjoyed her posts and looked forward with great anticipation to reading her quirky notes.

She fervently raced after a clinical trial, but only God knows why her road was rocky.  Although I never met her, she will forever be in my memory as an unselfish and graceful woman who fully gave of herself for the betterment of others.  As I was saying goodbye to my little bee, her dear family was saying goodbye to her.  She went home, and is no longer in pain.

Rest in Peace dear Cathy.  I pray for your dear husband and family.  May God hold you gently in his arms.

When bees say goodbye

I was captured today by the behavior of two little bees, one alive and one who was no longer living.  I spotted these beautiful little critters on the back patio landing that leads our steps to the rickety basement.  The basement is not finished, but exposed and houses the laundry area.  I had taken some clothes downstairs for the first of several runs of laundry and upon coming up to the ground level, there they were, this lovely pair of bees.  I had  intended to write today about my seminar, but this story tells us about what I learned most from the seminar.

At first the bees were hard to see, with the old cement, moss, tiny pebbles and what not.  But as I bent down to take a closer look, I saw one on it's side, not moving and the other passifying and tending to what seemed to be a dear friend.  I know absolutely nothing about bee behavior and did a quick search so that I could find some substantial information about what I saw, but really found nothing.

As soon as I saw the bees, I sat down on a step and watched, and gazed and wondered and almost felt the pain of the living bee.  I felt so bad, and wanted to do something to help it, but couldn't.  Since having cancer, I have found myself much more sensitive to animals in general, I just feel them in a different way than before.  They have spirits and are not just nerves and tissue.  For example, just last night a raccoon was on our roof, and upon it seeing me looking at him, walked from the edge of the house to an area just above the door and he just stared at me.  I could feel him and wondered, wow, and oh no...is this bad or good.  Either way, it was a being, not just an animal. (I've always believed all animals have spirits, it's just that now that sense is much more intensified.)

After sitting outside for a bit, I did a small search on the internet.  I did read that sick bees are either taken from a hive or take it upon themselves to leave the nest when they are sick, so as not to infect the rest of the bees.  It preserves the overall health of the nest and prolongs the hive's life.  I wonder if this is what had happened to the poor little bee.  Maybe the caretaker followed the bee to be with him during his last moments.

As I sat there outside on the step, I actually took the back of my hand and stroked the back of the caretaker bee. Before I did this though, I hesitated a bit because I thought, "don't do that, it's silly and it'll probably sting me".  Well, it didn't sting me or anything really.  It was focused on it's friend.  It just moved it's antennae  and continued to keep doing it's business.  The caretaker bee was stroking the dying bee with it's antennae, slowly moving around, seemingly to sniff and touch and massage it.  It was just fascinating. I have never seen anything like this anywhere. 


The caretaker bee was not in any way hurting the other bee.  The caretaker bee was literally taking it's antennae and touching the other bee in multiple places, as if to comfort it.  This went on for over an hour.

As I sat there, mesmerized by this activity, I started to think about what motivates a bee to do this. Why would a bee spend so much time taking care of another bee, who was obviously either dead or almost dead. I thought about love and how we, as humans, need love to thrive and to "be" and without love we could literally die of deep depression or other ailments.

I thought about how nature instills this loving instinct in all of us and why does this survival mechanism get bogged down and altered in humans.  

Well during this time I went back inside to call my dear Aunt who is having a minor surgery tomorrow,  to wish her well.  I went back outside when our conversation ended, and the caretaker bee was gone.  All that was left was the tiny body of the other bee, lying there still and in peace.  The space suddenly felt empty, and a feeling of loneliness swept over me.

So I stood there, quiet for a moment, and then moved the bee to the soil. I felt compelled to honor this little creature so I placed a few tiny rocks around it's body.  

At the seminar this past Friday, I felt lots of love in the room.  It was a course for ovarian cancer survivors, sponsored by the Foundation for Women's Cancer:

http://www.foundationforwomenscancer.org/

What I really learned at the seminar is that we all need to care for each other, care about each other, and pray for one another.  It is in this that we heal.

May you rest in peace little bee friend.  Thank you for reminding me of what love means, for without it, there's nothing.  To my readers, love your neighbors as you love yourself.  


Peace and Blessings to you.

Joy comes from all kinds of places

My JOYS for today:

1.  Playing a new game with Addie, she always wins no matter what.  I want to be a kid again, don't you?

2.  Just seeing my sister, gives me relief.  She came by with Addie Her daughter) today for a short visit, and it was just blissful.  Don't ask me what frog juice is, but I can tell you finding it is fun. I am thankful that she has a beautiful life with Patrick and the girls, it makes me feel secure.

3.  Seeing mom's huge smile when they were here just spontaneously having fun.

4.  Remembering the smile on my mom's face when my brother called Sunday morning.  And then I think about his beautiful children and I can't stop smiling.

5.  Remembering the smile on my mom's face when she talked with her brother today.  His son got a job in the airline industry, yay for him.

6.  Weeding (thank goodness the soil is really damp).  It brings you literally down to earth, you forget problems and enjoy the sun, the dirt, the green, and just working the soil.  I'll pay for it tomorrow for sure.

7.  Remembering being at karate last week with Mandy and the girls, what fun.

8.  Remembering going to Tammy's wedding two years ago, (almost) and now she's about ready to have her baby.

9.  Remembering the smile on my mom's face and the huge roar of laughter each time she talks with her sister Deb, it's fun to listen, mom has a great laugh.

10. Remembering the surprise and joy mom felt when she got a little blankie from her other sister Bern.

11.Remembering the soft little kiss from "J".  Now what am I going to do?  

12.  The most joy was the elated feeling I get from going to church, spending special time with God, praying for my family, medical team, friends, ovca sisters and the homeless. Knowing dad's OK.  Thank you God for all your help this week.

Peace, Blessings and all my Love to you

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

How heat helps kill cancer - The Scientist - Magazine of the Life Sciences

Maybe there are some positive benefits to having hot flashes after all!

A tiny break with tiny rabbits

http://weatheredsilo.blogspot.com/

My very talented sister has been creating tiny rabbits for all to enjoy.  Thought you might enjoy a break from cancerland.

Seeing "J" tomorrow, he's hinting about a kiss.  Wooooooooooooooooooooooooooooo?

Peace,

Denise

Wubby wubby feelings and the brain train

Just got home from a "happy walk" with "J" around the lake.  What a refreshing way to top off the day, lots of laughing, wubby wubby feelings and smiles.  I had such a great time with him.  He makes me laugh.  He is adorable, a real guy's guy, loves his kids so much and really cares about fellow human beings.  I hope it never stops.  Even a small dose of "J' brings light to my day (happy rhyme).

Still just friends.  I wish I was just a normal woman, healthy and able to just have a normal day.  OK, stop living in dreamland, it is what it is.

My head is swirling with thoughts of him, thoughts of my visit with the brain train engineers, as well as wondering how my future mastectomy is going to effect everything.  Sigh

So, to update you on the neuro-psyche visit today: great news.  I'm not at a total loss, YAY!.  The previous tests were showing that I was like a second grader in terms of math, etc.  So I got very depressed.  Well, the latest testing provided much more detailed and isolated findings, that encourage me to feel positive about my vocational future.

I do have short term memory problems and spatial problems, but my verbal skills are above average.  I'm between 80% to 90% in reading, math and spelling.  The testing revealed that I have strong abstract thinking abilities.  Non-verbal reasoning was strong, but remembering information out of context was below average. I wish I could give examples of this. I forgot the examples they used (ha). 

They were almost more concerned that my depression and anxiety aggravate my memory problems, but felt overall that my challenges can be managed.  That was a huge relief.  Nobody wants to directly say that chemo caused my memory problems, but I will say that it did.  I have an unwavering belief that chemo effected my memory, but I also have an unwavering belief that I can improve my memory and it will get better, especially when I get a part time job.

The one thing was they really wanted me to ask about getting on a different antidepressant, so I'll probably ask my doctor about changing medications.

I'm still petrified at the thought of being in a work setting, would rather have a million dollars drop out of the sky, but oh well.  I just don't want to get fired from a future job because I can't keep up.  That's a big fear.  I have a big list of things that make working hard, but I have to be positive.  One day at a time.

So this whole experience of going through neuro-psychological testing was needed, wanted and brought good results.  I want my family to be proud of me.

The next step is practicing interviews, getting my resume up to speed and getting clothes.

I was issued  a voucher to receive some free interview clothes!!!!  Yay Yay Yay  I have no money to buy anything to wear to an interview.  Having the opportunity to receive a few little dress suits will be much appreciated.  I am so grateful.  My next meeting with DVR is in a few weeks.

In the back of my mind I know I am going to have a prophylactic mastectomy, just haven't set the date.  As far as voc rehab goes, we're not putting anything on hold, we are forging ahead and will cross that bridge when we get there.  I'll need a little time off work to heal.

I am saddened though the more I think about "J" and how much I like him and how I feel pretty sure that the whole mastectomy thing could be a big turn off.  He wouldn't intend on that, of course, but I can just feel it.  See, I wasn't really planning on reconstructive surgery because I can't afford it.  I don't have 100K.  I need to look into my insurance policy and find out, but the reconstructive surgery is really three surgeries, and geeze, it's too much to handle right now.  Sorry for too much detail here.

So anyway, I'm just thinking out loud about "J".  He doesn't know yet.  I'm just now finding out what kind of movies he likes...................keeping it low key is just better.  I wish I didn't like him, it'd be easier.

So, good news on the brain train, and what else? Oh, "J" is perfect so far.  Not going to think any more about the BRCA1+ stuff tonight.

I forgot!  I went to Gilda's Club yesterday too. I officially became a member, finally.  Yay.  I have made a commitment to participate in a support group.  Even though it's downtown Seattle, ick, I'll go.  It'll be in the evenings once per week, only people who have or had cancer.  The social worker, whom I met with, said they are pretty concerned about the integrity of the group.  They want to keep a solid group together for 16 weeks, not a lot of in and out.  So I hesitated, then agreed.  

I think it needs to be done, go to a group and talk.  

I don't know when the group starts but I'm looking forward to broadening my network.

Here's a big hug to all you guys who support me and read my little thoughts from time to time. It means a  lot to me that you care.  You are in my prayers too, love you.

Peace,

Denise

Thanks Mom

My beautiful mother is taking a cat nap, here on the couch.  A perfect time for me to give thanks for being blessed with having this intelligent, thoughtful, beautiful and caring individual as my mom.

We had a great weekend.  My sister, her husband and girls came over to the house.  We played games and watched the Kentucky Derby.  Mom got a new grab bar for the shower, thanks to my brother-in-law.  Re-learned how to play "Clue" with my nieces.  Got to spend real quality time with the family, visit with sis and just relish the joy that mom is here.  My sister is a great mom!  I really admire her.

My brother called this morning to tell mom Happy Mother's Day, that was great.

So many OVCA sisters have passed this year, leaving behind, husbands, children, siblings, parents, etc.  It's a bittersweet time to celebrate any holiday now.  It's heavy.  Even though I know they are in heaven, and that they are now at full peace, it's sad.  I'm very lucky, very blessed, and hopeful.

I spent some time with "J" on Thursday. We had a light dinner, toodled around Seattle, went to a park for the perfect view, and then had a cupcake.  It was relaxed and fun.  Easy breezy, just the thing I needed.

As my mom relaxes here in dreamland, my most pressing thoughts and prayers are that she is happy.  She is travelling a tough road, finishing up surgeries for dialysis and taking all kinds of tests to determine her eligibility for a kidney transplant.

It's a tough time.  Please pray for her.  She is a rock.  She gets pummeled every day with challenges from her diabetes.  She is so tired.  I love her to death.  

So today I just wanted to tell God thanks, thanks for sending me my mom, and thanks for giving me my family. 

I hope all had a peaceful Mother's Day.  To those who have lost their dear mom's, I am certain that she is up in heaven smiling for she still feels your deep love.

To my Mom, I love you so much. Thank you for taking me in and being my angel.

Peace and Blessings

New York Times on Chemo Brain Lasting up to 5 years

MAY 4, 2011, 1:18 PM

Chemo Brain May Last 5 Years or More

By TARA PARKER-POPE

“Chemo brain,” the foggy thinking and forgetfulness that cancer patients often complain about after treatment, may last for five years or more for a sizable percentage of patients, new research shows.

The findings, based on a study of 92 cancer patients at Fred Hutchinson Cancer Research Center in Seattle, suggest that the cognitive losses that seem to follow many cancer treatments are far more pronounced and longer-lasting than commonly believed.

The study, published in The Journal of Clinical Oncology, is a vindication of sorts for many cancer patients, whose complaints about thinking and memory problems are often dismissed by doctors who lay blame for the symptoms on normal aging or the fatigue of illness.

“It’s clearly established now that chemo brain does exist and can continue long-term,” said Karen L. Syrjala, co-director of the Survivorship Program at Fred Hutchinson and the study’s lead author. “The real issue here is that recovery from cancer treatment is not a one-year process but a two- to five-year process. People need to understand the extent to which the cells in their bodies have really been compromised by not only the cancer, but also the treatment.”

The 92 patients in the study had all undergone chemotherapy as part of bone marrow or stem cell transplants to treat blood cancers. Although the range of effects of different cancers and treatments probably varies, researchers said the finding that cognitive recovery can take five years or more is likely to apply to breast cancer patients and patients who have undergone chemotherapy for other types of cancer.

The patients in the study were compared with a case-matched control, like a friend or sibling of the same age and gender who had never undergone cancer treatment. Both groups were given a battery of tests to assess memory and motor skills. The tests included a number of memory and word tests, like trying to recall a list of words or coming up with as many words as possible that all start with the same letter. Tests to match numbers and symbols and timed dexterity tests, in which thin pegs were to be placed into holes, were also included.

Comparing the test results of the cancer patients with those of the matched controls, the researchers found that among cancer survivors, most of the cognitive problems are largely temporary but may persist for five years or longer. Patient recovery generally followed a bell curve, with some showing improvement after a year, while others took two, three or more years to recover.

Dr. Syrjala said the good news is that information processing, multitasking and executive function skills all seemed to recover within five years.

“One of the things people complain a lot about during treatment is word finding, where you know the word, it’s a tip-of-the-tongue experience, but they can’t come up with it,” said Dr. Syrjala. “We hear that so frequently during treatment. The happy news in this data is that that piece of cognitive function does recover, but it usually takes longer than a year.”

However, verbal memory and motor skill problems continued after five years among a large group of patients. Although some neurocognitive deficits are expected to occur with natural aging, the percentage of cancer patients who still had cognitive and dexterity problems at five years was 41.5 percent, twice as high as the 19.7 percent reported in the control group.

Although the news of long-term cognitive problems may be disheartening to patients, it’s important for families and patients to know that recovery can take a while. More important, patient treatment plans should include the teaching of coping skills to compensate for potential cognitive losses.

“The first step is to set realistic expectations for people,” said Dr. Syrjala. “It’s not just patients, but their families and employers who need to realize that their brains aren’t processing as rapidly.”

Many of the cognitive deficits were relatively mild and easily addressed with coping skills like note taking or strategies to improve focus.

“We all lose memory with time and learn to compensate,” Dr. Syrjala said. “These patients just have to recognize that their brains are perhaps not as finely tuned as they were before they were diagnosed with their cancers, but they can compensate very effectively.”

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Dear Sarah, Rest in Peace

Sweet Sarah has passed away today.  I just learned of her passing and although I knew she had chosen to let go, I did not believe she would pass so quickly.

I just did not believe it, it's too much.  Please visit her website http://carcinista.com/

Sarah appeared to me as a cornerstone in the community of women with ovarian cancer. She will be desperately missed by all.

I feel selfish for having written about myself earlier. I am in shock.

Will miss you Sarah.  My deepest sympathies to her loving husband, children and family. May you rest in peace dear sister.

Love,

Denise

Body Image, dating and freaking out

"J" and I had such a great phone conversation on Monday.  We talked for almost an hour, everything from the Bin Laden situation to religion to kids' soccer.  It's been a really long time since I had a guy show any interest in me and it felt pretty good.  I am relieved to say that yes, he believes in God, and has some Catholic in him.  Yay.  The most important thing was a belief in God.  He doesn't regularly go to church, but that's fine, no judging here, he has kids and stuff.  So anyway, with all that's going on in the world, I am a bit consumed with this new individual floating around my little world here.

He invited me out tonight for a light dinner and drive, because I am new here in Seattle, that would be super.  I of course said, "sure".  Well, as today progressed my panic grew.  I'm not ready to date, just not, no way.  I never knew I wasn't ready to date, how could I know until now.

Oh geeeze, my stomach got all upset and I said to mom, I have to cancel.  She said "why".  I said "Because I'm not ready, I just can't date".  Mom and I talked a little and I sort of gave her the short version of all my issues, but she understood.

See, I can tell "J" and I have good chemistry.  He makes me laugh and he's very good looking, and we seem to be able to have good conversation.  I know in my heart there will come that moment when we could kiss or something and I just can't start that.  I have too many issues related to having gone through all the debulking surgery.  Some issues are body image, not feeling pretty or sexy or whatever.  Some issues are that I literally have all this pain and cramping.  I just don't want anyone else to actually have to deal with that.

I'm not in the same shape I was.  Even though I'm not overweight, I have a lot less muscle tone.  I'm exercising every day but trust me when I say, it ain't what it used to be.  Haven't a clue if I'll ever
get my tone back.

I don't want to be the one to disappoint in the end so I sent him a text saying that I was a bit of a mess and needed to cancel but could we talk.  So he called me and we talked for a bit.

I expected him to totally say that this was too much information, too many problems and good luck.  Instead he became empathetic and caring.  He just said that if "friends" was all I could do right now, that was cool.  He didn't want to have pressure on dating necessarily, but it was up to me.  I was so relieved.

So we are supposed to have a coffee or something on Thursday evening.  I just want to have fun with him for now while I work out my issues.  PLUS, I don't want to get attached to some guy and then have him drop me because I have all these issues.  It's better that we just be friends and get to know one another, and see what happens.

This roller coaster of emotions prompted me to call Gilda's Club.  I have an appointment later this week with a social worker to see if going to a support group would work for me.  I have been in denial that I needed a support group.

I feel safe in my little room, being with mom and just doing the minimum in terms of treatment for now.  I just haven't really gotten on board full scale to heal my heart.  My heart is a mess, and I have no self confidence.

I am close to becoming a nun, no joke.  I have often thought that I should spend the remainder of my life in prayer, that works for me.  I never in a million years thought I'd even have one  more date.  I realize I sound like a teenager here, but it's true.  I mean, I didn't expect to survive, let alone meet a cool guy.

I owe everything to God, and am resolute to doing my best to honor in God in every way.  

There is a plan, and I have no clue what it is.  All I know is that the more I listen to the little voices in my heart, the inklings, the feelings, the better I do.  If I would not have said anything, gone out on a date, knowing that I have no intentions of intimacy for a really long time, that would have been wrong.

So the friends thing is good for now.  I do like him.  

I still need to have my mastectomy.  I mean, there's just too much left unsaid right now.

Well, thanks for listening.  I hope this makes sense to somebody.

I just need to address some emotional issues on a more personal scale, and really handle them.

Love you and Peace

Dating after cancer, complicating

I just had a wonderful date with a guy I met at a hospital here in Seattle.  I was shocked that he asked for my number, but I gave it to him anyway.  We had met one time before when my mom had a prior surgery, so I was familiar with him.  He works there.

He smiled a lot and generates a good "vibe" so I thought, well, what's the worst that can happen?  

We chatted on the phone the other day for about 15 minutes and set a date to meet at a 

casual Mexican food place for dinner.

I am not sure I'm ready for this step in life.  I mean for all practical purposes, I literally have no "date" clothes.  I threw all that away when I moved from California, only so much was gonna fit in my car.  I  needed to make sweat pants a priority.  I can't wear jeans any more, so that was just a waste of trunk space.  Anyway, a girl likes to dress up, even if it's for a taco.  (Actually I had pasole, and it was yummy).

The REAL reason I'm not ready is the obvious, intimacy.  Read no further if you don't want to know about all this, but it's part of life and most healthy people have a partner.  Truth be told, I only want intimacy with the man I marry.  At this point with all I've been through, nothing else is OK.......sigh.

He (J) is cute, funny, adorable and I know that we'd do fairly well for a while.  He's fun, but real, down to earth, has kids, is really responsible....hello?????

But I may have a prophylactic mastectomy in the next year or so.  What if my cancer comes back?  I still have all kinds of icky problems from Chemo, and abdominal pain, etc.  My huge scar.  Do I really want to get all excited about a good guy only to at the end of the day have to say goodbye because of my cancer issues.  I couldn't blame him.  He doesn't seem the type, but he has his wishes, just like everyone else.

He knew I had ovarian cancer before our first date, so I gave him an out right away.  We talked a little about it again, lighthearted discussion, and he still wants to see me again???

He is so sweet.  I want to just take it a day at a time.  I haven't been on a date in over two years.  Yikes!

So.....I don't know, I'm more comfortable with me and God.  God loves me no matter how icky my body is or how much nausea I have or how terrible I look.

People are different.  If I'm dating I want to look pretty and not be feeling bad.  

Well we have a long way to go anyways, cause we haven't spoken about real important stuff like religion and politics yet.  So....really the most important thing is God.  Politics aren't really a barrier, he has a good heart, I can tell.  But I go to church all the time and want someone who is faithful to God.

I pray he is, and I pray he can accept me.  But should it not become more than a friendship, he will be one of my finest male friends here in Seattle.  If he wants that.

I don't know what to do here.  I guess I'll just go along with what God has presented to me and see what happens.  I feel really lucky that I went on a date.  I thought that would never happen again.

PS.  my neuropsyche results are in, just need to get our appointment set.  So I'll be sure to let ya'll know about that.

Peace and Blessings to you all.

Dogs that can sniff cancer from ABC News

http://news.yahoo.com/video/health-15749655/can-dogs-sense-cancer-25023195

This is an impressive video clip about how dogs can help catch cancer in it's early stages.  I learned about this segment from a teal sister on inpire.com.  Thank you for sharing this with us.  I want all my followers to know more about how man's best friend is truly a life saver.

Peace and Blessings to you all.

Denise

Pateeta, may your sweet heart rest in peace

I am writing to say that our dear teal sister, Pateeta, has passed away.  I did not want this day to come.  We knew it would be here.  I am so sad.  Pateeta was such a strong, spirited, fighter. 

She was a rock to us in the ovarian cancer community.

See her blog "Shades of Blue"

Dear God, please keep Pateeta close to your side, keep her warm and safe, happy and well. 

 Rest in Peace Pateeta.  My deepest sympathies to her family.

We love you Pateeta and will miss you dearly!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

God Bless

Testing Day

Yesterday I completed another round of cognitive testing with an assistant to a neuropsychiatrist.  I was wiped out, and had to take a nap when I got home.  I was toast for the rest of the evening.

My examiner was friendly, I'll call him "B".  He was a really nice guy, young, hard working, and seemed to know what he was doing.

I had to drive to a new building in downtown Seattle, so of course I got a little lost but made my way.  I parked, walked around a bit not knowing the best entrance because the main doors were locked.  The parking attendant helped me along to the skybridge.  I had to call "B" twice to help me find the Starbucks.....trust me there was no signage.  Anyway, I was nervous, probably a contributor to my rocky start.

The total test time really was about 4 hours.  We went into a "little room" and he asked me a zillion questions.  I was nauseous and had some abdominal pain, the usual.

He did try to make me feel comfortable and explained each section along the way.  He asked me to remember lists of items, meanings of words, to remember story content, re-draw things from memory, put blocks together, do math, and finish sequenced drawings on paper, amongst other things.

I remember from my last round of testing that I thought I did better than I actually did, so I dare not try to predict my outcomes.  I can only say that I know I did better on some parts versus others, but who knows.

I really had a hard time with remembering lists and it wasn't until this morning that I remembered who painted the Sistine Chapel.  I could see the fresco, visualize the other works of Michaelangelo, yet could not remember his name.  That's so darn frustrating.

For real I have a hard time reading.  I can play around on the computer for long bits of time, my eyes get tired.  Reading a book though is different, for some reason.  I get real tired, can't stay focused.

Anyway, "B" seemed proficient enough and let me take a break when I needed it.  He's probably given this test so many times, he's memorized it by now. 

I think I was given the WAIS-III, because I saw part of the cover of the testing manual off the side of his computer.

So what will this matter in the long run?  I think it's really important because maybe patients on chemo may need to be more proactive with mental exercises as part of their treatment, IF that's even possible.

I remember being so drugged out I couldn't concentrate on TV, now that's bad.  Feeling like an observer, like other people are talking, but I'm not really there.  "wa wa wa" kind of thing, all the time.  I had just no excitement.

The only emotion I remember while on chemo is fear.  Real true fear.  Fear of people breaking in the house, fear of other people dying, fear of the shower head, fear of everything.

Now that fear is gone, but I still worry about other people more than normal.

If the rest of my life consists of me as who I am with huge holes in my memory, then OK.  I am alive. 

How will I be able to work though if I have a really bad memory or can't process information correctly?  That's the rub.

I remember the other day for the first time in two years I drove around an extra 20 minutes to listen some CDs and sing in my car.  I LOVE music and am really just now starting to enjoy it again.  I want to have a little place of my own, blast music, sing along, dance in the kitchen, and just laugh. 

I have to believe that I will make it and earn enough to live my own life again, I just have to.

Sigh.  So there is a lot riding on this test.  I pray the outcome is that my defecits can be mended or at least compensated for somehow. 

If I have two years or five years, I want those years to be meaningful.  I feel engaged in life now.  I feel ready, even though I still need 12 hours of sleep per day, I'm more awake and more energized. 

I will post my results...........not sure when I'll get them.

Well, this is Easter week.  Always a trying time for me.  I feel the pain of Jesus so deeply and although the ultimate joy will be his resurrection, the week of Easter seems to always bring me a real challenge.  Always has, like a car accident or losign a job.  So I pray this year I am free of any additional pain.

I thank you God for my family, friends, doctors and the opportunities before me.  I pray that my mom has good news this week, that my niece regains her inner joy and that my family stays strong and healthy.  I pray each of you feel God's love each and every day.

God's Peace and Blessings to you all.

Denise

Kathy Bates on Ovarian Cancer, courtesy You Tube

http://www.youtube.com/watch?v=ZEMjgYyJZxg&feature=player_profilepage

For all women to see.

Peace

CA 125 and chemobrain

Well, to start off with the good news, I received copies of my labs and my CA125 is 8!  I am so so so happy, I almost feel bad about.  There are so many OC sisters struggling right now with rising levels, recurrences, and in the midst of treatment, and I don't want to gloat.  I just want to mention it so that you all can see that there is hope a year after chemo ends.  Thank you God.

Although there is no guarantee that my level will stay low, I FEEL stronger and more confident that now is the time for me to do something that will make a difference.  I have some fundraisning and awareness ideas for the Seattle area, and I'm awaiting the completion of some brainstorming sessions before I share. I've spoken with a local cancer support group and am awaiting their response. I can't do it alone, but I think my ideas are unique and valuable opportunities for the Seattle area.

Chemobrain is one of three enemies right now. 

Chemobrain, abdominal MAYHEM and rheumatoid arthritis are always crashing my party.

As you know I received bad news on my aptitude testing.  I am scheduled to see a neuropsyciatrist next week (or is it neuropsychologist) for a major battery of testing.  We'll see.

They are trying to figure out why there was such a descrepency between my verbal and math and abstract thinking.  Do I really want to know how mushy my brain is?  Or is this the start of something good?  I think overall if I know my strengths and weakness, I won't start down the wrong road when it comes to work.  AND, I can target my mental rehabilitation better.

My testing also shows I want to remain isolated.  The only thing is, a big huge reason I want to stay away from crowds is that I have a weak immune system. I think that detail is not clarified in the psychological testing, so it looks like I am a complete hermit.  I tend to be a homebody, but I did used to have a life before my chronically weak immune system reared it's ugly head.  Oh well, what can I do?

My WBC/and neutrophils are currently below normal, so I am susceptible to bacteria and viruses.  THAT is why I don't go out much.  I'll try to explain that to the tester, but we'll see.

He said that there's nothing more I can do to prepare for it, just be ready.  To tell you the truth, I'm nervous.

I know I have memory problems.  I forget things all the time, and as I've said before, my personality is different.  I feel almost like a child, weird.  I just want to PLAY.

Can I get a job where I play all day??????  Ha, that would be true joy. 

I was so happy to go to church last evening and have an opportunity to pray deeply for my family, friends, doctors, OC sisters and other friends with cancer who are in pain.  I pray for you every day.

Thanks for taking time to check in.  I'll send a note about how the testing session goes.  I haven't a clue as to when I'll get the results.

By the way, after the testing, Dept of Voc Rehab plans to put me in a community based job setting to see how I actually do at "work".  Nervous about that too, but I need it. 

Peace and God's Blessings to you.

Love,

Denise

Fantastic doctor appointment

After being up most of the night with worries, I was able to come home today from my appointment and take a long nap.

I saw my wonderful gynoc today and received excellent news.  She can't see any cancer for now, Yay Yay Yay.  I went in early for a chest/abdom/pelvic CT scan and blood test, as part of my usual 6 month routine.

Because of the ongoing abdominal issues, I was concerned that cancer may be returning, especially since I still sleep almost 12 hours per day.

She spoke to those issues and said that I just need to keep exercising, and keep doing more, because I am getting better.

I distinctly remember that my overwhelming joy today was so different from my emotion this time last year.  Last year I was cautious, numb from chemo, super tired, and really couldn't believe I had made it.  NOW, I am here with great results and plan to cherish each precious moment God gives me.

Even though the vocational testing indicates me to be cognitively challenged right now, I am going to do all I can to get my brain back together and working well. 

But at the end of the day, if today is how the rest of my life goes, I am the luckiest person on earth.

Thank you God for bringing me my doctor and family and friends to help me survive the incredible challenge of ovarian cancer.  I will post more on this, I just wanted to get the exciting news out.

Peace, Love and God Bless